Health and Social Care
If you read my most recent post in the campaigns section, I discussed how the NHS and NICE have set up respective frameworks to ensure that patients are involved in their care and treatment.
This is especially important if you have a condition for which there is so far no evidence-based medication or treatment, for example, CFS/ME. Any care plan put together by an NHS service, be this a GP or chronic fatigue/pain clinic, needs to be tailored to the patient's lived experience, not foisted on the patient in a way that ignores their knowledge of their body and their limitations.
If someone feels that they have not been involved in the development of their treatment plan, there are steps they can take to report the service involved.
The Care Quality Commission (CQC) - the independent regulator of health and social care for England - stipulates in Regulation 9: Person-Centred Care that:
'Providers must work in partnership with the person, make any reasonable adjustments and provide support to help them understand and make informed decisions about their care and treatment options, including the extent to which they may wish to manage these options themselves.’
If you feel like your GP is in breach of the regulation, you can raise concerns about the service. Contact the CQC with full details of your complaint, along with a name and address of the care provider. This can be left anonymously. Alternatively, you can call 0300 0616161 to speak to our concerns team directly.'
All patients have the right to be involved in their own care and treatment at a meaningful level. In the absence of robust involvement guidelines for services related to the care of people with energy-limiting chronic illnesses, including those which provide a premise for the meaningful involvement of patients in service development (I am working on this!) patients need to be aware of how they can hold their NHS service to account.
If you are suffering with a chronic health issue for which doctors can’t find a cure or suggest much in the way of treatment, it can feel like you are being left to fend for yourself. If blood tests fail to indicate anything out of the ordinary, it is often recommended that people whose conditions comprise an element of chronic fatigue and/or pain (please note here that chronic fatigue is not to be conflated with chronic fatigue syndrome, or ME, though the scope of this post can be applied to a range of conditions, including CFS/ME) be referred to specialist clinics, at which point patients can feel there is little point in conferring with their GP further.
With any chronic illness that significantly impairs your quality of life, it is important to cover all bases. Going back to see your GP can seem like a daunting experience, especially in the narrow time bracket offered to patients, but if you feel there are still avenues left to explore, it can be helpful to have a strategy when visiting your doctor.
Below are a series of suggestions as to how you can get the most from your GP visit:
You may have a few items that you want to talk through with your doctor, and in order to do them justice, they might warrant more than one appointment. It can be useful to book a double appointment, if you are able to wait (doctors get booked up quickly, so you may need to wait a fortnight or so), or book two separate appointments and work out what needs to be tackled most urgently. If your condition makes it difficult to prioritise tasks, it might be worth asking a trusted friend or family member to help you write a list of what needs to be discussed, highlighting main concerns and any peripheral issues that also need to be dealt with.
Just because doctors haven’t unearthed anything yet, it doesn’t mean you should ignore worsening symptoms, or stop pursuing something that you feel is wrong. When I took to Twitter to ask people what stopped them from going back to their GP after they had been told there were no stark indications there was anything the matter, most people mentioned shame, a fear of being talked down to or concerns over wasting their doctor’s time. However, some noted that in the grand scheme of things, they had to find the strength to overcome these anxieties, and instead focus on the possibility that another visit might just bring something new to light.
2. Take someone with you
If concentrating on what the doctor tells you is difficult, or if you sometimes struggle to communicate your needs, it can be helpful to ask a friend or family member to accompany you to your appointment. That way, key information is less likely to be missed, and it might make you feel more confident when it comes to asserting your needs.
It is possible to record GP sessions on the UK, although your doctor has the right to ask why. Recording an appointment can make it easier to process what has been said, as it gives you a means of going over your conversation at your own pace.
3. Do your research
The blood tests your GP offers you are not always extensive, and it can be useful to conduct some research prior to your appointment. The ME Association, for instance, goes through which bloods should be done to rule out other conditions that could mimic the symptoms of CFS/ME, though GPs aren’t always willing to carry them all out. A lot has been written on the effects of hypothyroidism on energy levels, though the doctors in the UK use much broader parameters when it comes to judging whether someone has an underactive thyroid than countries such as Germany, Sweden and Belgium.
Requesting a print-out of your most recent blood tests can give you more time to process and consider the results. Google will supply an answer for pretty much any slight anomaly on a profile, so I wouldn’t recommend using vital energy resources to flag up every result that is slightly too high or too low. Trust your doctor to interpret the results as a whole, but do use them as a reference point for what the doctor will tell you, and to prepare and/or back up any queries that are bothering you.
A doctor has to sanction a print-out of any blood test results, so if you know you have an impending appointment, ask reception to put a ‘cut off’ date on the request. If you need more than one day before your appointment to go over your results, tell reception to request that the doctor sanction the print offs a few days before you are due to be seen. If you are unable to collect the results yourself, consider asking a trusted friend or relative to collect them on your behalf.
4. Be succinct and honest .. and steer clear of psychosoma!
The mind can influence the body and the body, in turn, can affect the mind; there are ample physical manifestations of impaired mental wellbeing, perhaps most notably the fatigue that can be brought on by depression. However, if you are experiencing chronic and disabling pain and/or fatigue the cause of which you are adamant is physical, avoid colluding with any doctor’s suggestion that your experience might derive from the mind.
GPs have to ask about recent trauma, stress and your mental health in order to rule out the possibility of any symptomatic links to depression or anxiety. In the early stages of illness, patients are more likely to accept a psychosomatic explanation for their symptoms and not pursue further investigations; that is, until symptoms persist and/or worsen.
If your gut instinct is telling you the root cause of your suffering is physical, especially if you have experienced the physical effects of impaired mental health and are able to distinguish between the two, tell your GP.
This is especially important for those people in the early stages of post-viral fatigue or CFS/ME; exercise if often recommended to help with depression, whereas exercise can, according to Action for ME, exacerbate the symptoms of those with CFS/ME and potentially make the condition worse. Try to stay attuned to your body and take note of any changes in symptoms.